One Year Out: Reflections on Losing a Child

Joyce Heil, our pediatrician's wife, recently shared this essay with me.  It touched me deeply and gave me strength at a time when I needed it. She gave me permission to post it on my blog.  I thought many of you could relate and possibly, after reading it, take away some of her wisdom and lovely perspective on raising a child with a disability.  She wrote this a year after their daughter Jillian passed away.  She had Rett syndrome.  

One Year Out:  Reflections on Losing a Child

By Joyce Heil

We lost our eleven year old daughter, Jillian, a year ago.  She had a viral infection and suddenly her heart developed an arrhythmia that doctors could not fix.  While her death was sudden and unexpected, she was at risk for premature death because of her disabilities.  

Jillian has two older brothers, now 15 and 14, and a younger sister age 6.  I would like to share with you a few aspects of our journey this past year.  

Most people feel the loss of a child is catastrophic.  And it is.  But we lost a lot of our daughter years ago when she regressed in her development as a baby.  There were so many losses along the way as she missed milestones, lost what ground she had, and suffered the distorting of her body.  We tried as a family to look at those losses in the face and grieve them, at the same time receiving who she was and the gift that she was.  This year has been a continuation in that path of grieving and rejoicing that began with her diagnosis.  

As you all know well, caring for a disabled person is challenging:  anticipating needs for someone who cannot tell you, managing the medical treatments for a complicated patient, balancing the needs of this child with the rest of your family and your own life.  These are hard things.  We have seen since Jillian is gone, how she called us to a place of unselfishness that was good for us as individuals  and as a family.  Having someone around you who constantly demands that you think outside of yourself is truly a gift.  After Jillian died, my then 13 year old son said, "Mom, I don't think we get along as well as we did when Jillian was with us."  And he was right.  Jillian called us to a higher place.  

Similarly, we recently took our first big family vacation without Jillian.  We flew to southern California for a family reunion.  I don't know about you, but when we traveled with Jillian, we had to really function well as a family just to survive!  My husband and I had to work as a team.  The boys had to help push the wheelchair or corral their younger sister.  Everyone had a job.  Now it is easier.  The boys can listen to their music, Paul can nap, I can read, but we are at risk for being short with each other, self-absorbed and independent.  Now, we had to fight to be a team even though the trip was so much easier.  And we were not Jillians' ambassadors anymore.  We were just a regular family.  It is not bad to be a regular family, but I missed what Jillian called out in others as we pushed her chair.  She brought out the best in people, in us and those we met.  

I miss Jillian's smell.  I miss her soft hands, her furtive glances, her smile given when least expected.  I miss her simply being present.  

She taught me that suffering is wretched and that wretchedness must be faced.  But even when we want to run away so bad, brokenness brings a kind of life on this earth nothing else can.  I don't know how you feel about heaven, but one day my body and mind will be broken, too.  And I think she will be waiting to greet me.  I'm excited about that day.  

The work that you do, the caregiving you offer, the tears you shed, the love and joy you give and receive on your journey with these children is some of the most important and transforming work on the planet.